Are We Ready to Edit the Fetal Genome?

Are We Ready to Edit the Fetal Genome?

This episode of SciShow is brought to you
by the American Society of Gene and Cell Therapy. [♪ INTRO] Gene therapy is probably one of the most mind-boggling
developments in the last few decades of medicine. The fact that we can treat certain diseases
by changing someone’s genetic makeup seems like it should be straight out of a sci-fi
book. In fact, when I was a kid, it was. But it can also be a little misunderstood. One of the most common misconceptions about
gene therapy is the idea that it will someday be used to create what people call “designer
babies” — essentially, kids who have their traits chosen before birth. Things like intelligence or eye color, or
even whether or not they’re gonna go bald later in life. The truth is, most gene therapy research
right now doesn’t involve modifying fetal cells at all. And even when it does, researchers are looking
to prevent or treat genetic disorders — not customize DNA just because they can. In some ways, it’s just like every other
kind of medicine. And in others… it is very, very different. But one way or another, fetal gene editing
could be a big part of the future of medicine — a future that may be here faster than
you think. There are a few different types of gene therapy,
but the best-studied ones involve viruses. The basic idea is that scientists take a virus
— called a vector — and remove the parts that cause disease. Then, they insert bundles of information for
the vector to deliver instead. That information usually takes the form of
instructions, telling the body to produce something like a protein that it’s naturally
lacking. For example, those with hemophilia don’t
have enough of a specific blood-clotting protein. So the gene to treat it would tell their cells
to start making those protein molecules. Over the last few years, there have been an
increasing number of successful gene therapy tests in both lab animals and humans. But treating a disease after someone is born
can still come with some complications. Some treatments come with risks, others aren’t
thorough enough, and, for some conditions, there just aren’t useful treatments at all. So the idea behind fetal gene therapy is to
prevent these diseases before someone is born. It might involve treating an embryo directly,
or treating a fetus by injecting vectors into something like the amniotic fluid. But whatever the method, most researchers
agree that these treatments shouldn’t be used for just anything. In the late 1990s, the UK’s Gene Therapy
Advisory Committee published two criteria that any fetal treatments worth considering
should meet. First, they should have a clear advantage
over other treatments, like transplants or postnatal therapy. And secondly, they should be used for life-threatening
diseases with no suitable treatment. In other words, the heart behind this is to
help people to be as healthy as possible, just like other types of medicine — not
to, say, genetically engineer an X-Man. The general consensus of other ethics committees
has been along the same lines. Still, even with guidelines in place, most
of these therapies are currently too risky to try in human fetuses, so research has mostly
been confined to animal models. Pregnant people can get blood and tissue tests
to determine if their child is likely to have a genetic disease — including cystic fibrosis,
hemophilia, and sickle cell anemia. But there are not many immediate options if
those tests are positive. We are making progress, though. In 2018, a promising study in Nature Medicine
showed how fetal gene therapy could treat an illness in mice that is similar to Gaucher’s
disease in humans. Gaucher’s is an inherited disorder that
causes an enzyme deficiency — specifically, for an enzyme called glucocerebrosidase. Without healthy levels of it, waste builds
up in the body, which can lead to all kinds of trouble. Often, this disease can be treated by getting
weekly enzyme injections, but a certain type of Gaucher’s — type 2 — isn’t treatable. In this type, there isn’t enough glucocerebrosidase
in the brain. And because of the blood-brain barrier that
filters out most molecules, the enzyme injections don’t work. The disease is often fatal, and by the time
a baby is born, a lot of the damage has already been done. So researchers have been looking into how
to treat it using fetal gene therapy. In the 2018 experiment, scientists injected
the brains of fetal mice with vectors full of instructions to make that missing enzyme
— and it seemed to help! The mice had relatively normal enzyme activity,
although they did tend to weigh less and didn’t perform as well on movement tests. A follow-up experiment seemed to be even more
encouraging. In it, researchers injected the vectors into
the bloodstream instead of the brain. The mice were only allowed to be kept alive
for 55 days for ethical reasons, but during that time, they didn’t seem to be any different
from regular mice. The team also showed that this vector-injecting
method worked on larger animal fetuses, like macaques. The study was so successful that some scientists
argue we are ready to start clinical trials of this method in humans. But others disagree, pointing out that success
in pre-clinical studies doesn’t always equal success in clinical trials. So they think we need to keep researching. Because that’s the thing about fetal gene
therapy: It’s really complicated, both scientifically and ethically. After all, as soon as you start clinical trials
— treating human embryos or fetuses that will develop into full-grown kids — you’re
dealing with a person’s life. And that’s not something to be taken lightly. We have done trials on fetuses before, but
only using methods that were heavily studied and shown to be safe. Like, in another 2018 study, published in
The New England Journal of Medicine, researchers used fetal gene therapy to prevent XLHED — an
inherited disorder that impairs sweat glands — in three babies. The kids were around a year and a half old
when the paper was published, and seemed to be doing okay. The key was that the researchers were using
extensively tested methods, and also got permission from their hospital’s ethics committee. That’s very different from the news that
broke just a few months later, when it came out that a Chinese researcher had altered
human embryos using CRISPR, a newer gene-editing technique. This trial violated most of the accepted ethical
guidelines. For one, it was done to reduce the babies’
chances of contracting HIV, and there are much less risky ways to do that. The scientist also didn’t get permission
from a committee, and, most importantly, the method he used isn’t established as safe. CRISPR has done great in the lab, but it’s
also been shown to cause occasional, accidental mutations. Thankfully, the kids are healthy so far, but
that doesn’t mean they always will be. So, let’s just say there’s a reason we
have these guidelines. In the future, there will likely be a time
when we can safely edit an embryo’s genome in all kinds of different ways. But even when that day comes, there will be
other things to think about, too. Like, what would the consequences be if someone’s
edited genes were passed to their offspring? Or if the edited gene mutated over the course
of someone’s life? And then there are even messier questions,
like how far is too far when it comes to gene editing, and if this science is interfering
with evolution… or if it matters if it is. The most we can say is that, right now, fetal
gene therapy is really only intended for necessary treatments. The next steps are to continue the animal
tests scientists have already started, to really understand how this science works and
what the risks are. Because at the end of the day, when these
experiments are approved for more frequent clinical trials in humans, we want to make
sure they are as safe as possible. If you’re interested in keeping up with
the latest research, you should check out the new patient education portal from the
American Society of Gene and Cell Therapy. It’s a super comprehensive resource for
everything you’ve ever wanted to know about the different types of gene therapy, how they
work, and both past and ongoing research into all kinds of treatments. And it is completely free. To check it out for yourself, just head over
to, or follow the link in the description below.

100 thoughts on “Are We Ready to Edit the Fetal Genome?

  1. Guess someone is not following protocol. Blue eyed, blond haired Chinese baby. OK, well blue eyers anyway. Anything that can happen, that people are willing to pay for, will happen.

  2. Think you should focus on if a fetus has a developed nervous system it is capable of feeling pain. Given that lefties tend to like you more and how topical abortion is it would be good to see some educated that they are mutilating another human being, not just "terminating a lump of cells"

  3. Are We Ready to Edit the Fetal Genome? No. Are we doing it regardless ethical, wisdom, common sense and scientific knowledge? Yes. Tell Martians not to tweak their genome. We will create a Homo Sapiens Martians in the end and we will reboot evolution.

  4. Seriously, I am disgusted by ethics comities…. pushing their own quirky values on others….Ethics is really unnecessary

  5. For me, if I learned that my baby would die shortly after birth from a disease, I would do anything I could to give that baby a chance at survival before terminating the pregnancy. So I would take part in gene therapy clinical trials.

  6. It never ceases to amaze how inconsistent the general mindset is concerning the human foetus. One one hand we have legislation that allows abortion without regard for the ethics or rights of the unborn child (the mother trumps the infant) and yet we have ethical boards to determine if gene editing crosses any barriers. The general mindset of Evolutionary theory says humanity is nothing more than an intelligent animal, yet we concede to animal testing without blinking an eye. Which is it? You can't have it both ways without hypocrisy.
    The only way to transcendent authority is to accept God's Word as truth. Without it, the inconsistent mindset concerning life, ethics and no go zones will continue.

  7. Well take a look around, how many people require glasses, inhalers and other medical aid? If we don't do anything everyone will be a blind lump of fat. Not to mention the amount of cancer these days. MAKE THE HUMAN RACE BETTER.

  8. It's really an interesting question how much we can change to still qualify as a human (hello cat-girls and bunny-girls) or how much you could change in your own body and remain yourself. That's also a very tricky question as nearly no molecule will remain in your body for your entire life! You change with age both physically, personally and even mentally (memories do get corrupted)

  9. Good video. Although you clearly put it in a good light after getting thier money lol. Gene editing is morally very tricky.

  10. My view on Gene alteraois the same about circumcision and piercing little kids ears.

    Don't do it because it's not your body. It's up to that person whether or not they wish to alter or cut off parts of their bodies.

    The ONLY exception to this is when it is absolutely truly necessary for medical reasons. Such as discussed in this video, a genetic disease.

    But aside from that, it shouldn't be done.

  11. I want my first born son to a have a sick chainsaw for an arm and a peepee that doubles as a laser rifle.
    Scientists. 👏Make👏 it👏 so

  12. Some babies will receive gene therapy to help save them while over 40 million other babies in the US will be killed by abortion… Something is extremely wrong here!

  13. But that chinese guy modified of the genes of those twins to enhance their brains. Personally i loved the movie Gattacca and can't wait for it to be reality lol….

  14. If I ate so much honey in a sitting, would it kill me or something? I've eaten half a jar of icing before and lived…

  15. Imagine it: a doctor comes in a says the test indicate downs syndrome or hemophilia or any number of little horrors you had no idea existed until someone told you. Now instead of contemplating termination, you get a series of injections or a patch or a prescription for pills. Frankly, with care and forethought, I see no problem here.

  16. What's going to blow this open is that since medical gene therapy will be covered under health insurance – it will remain expensive. However – the gene therapy for creating 'designer babies' will get cheaper all the time. And it will be impossible to prevent because any parent willing to pay $200,000 more for a house in a good school district will be willing to pay for the 'designer baby' that the think will have an advantage in life because desirable qualities were fine tuned. There probably already is research going on for tweaking the human genome for higher intelligence, athletic ability, good looks, etc. And this research will happen because the people who can do this will become very, very rich.

  17. Everything back to dollar and cents , if u use gene to treat and cure a disease , pharmaceutical company will have big issue lol

  18. Thanks for making this video. The real issue is does your child want laser eyes…? Do "you" or anyone have the right to precisely define/edit the genome of your child at their whim? To create a child to your own liking no matter how they will be viewed by society?

  19. I'm still of the opinion of, "who the hell do you think you are in trying to kill off all mosquitos with gene therapy?"

  20. We need people to understand eugenics isn't bad. However, applying it for grossly arbitrary principles like skin colour is obviously wrong.

  21. Yeah whatever we all know what will happen here, first changing life threatening diseases, next preventing general disease, and then designer babies.
    It is all a matter of time and changing mentally on the topic.

  22. I’d like to see a future where gene therapy can be used as medicine AND to customize the human body in cosmetic ways.

  23. "Gene therapy may lead to designer babies" is not a misconception. While you're correct by saying that scientists use it only to edit genetic diseases, the same tools they develop may be later used to edit many other things, by people with different motives. It's more of a warning for the future.
    Ethics Committees, while important, are fragile and can be either corrupted or neglected at some point in the future

  24. The difference between "preventing genetic disorders" and "customizing DNA because you want to" is just a matter of perception. When you can put things in the order you like, anything you don't like becomes disorder eventually.

  25. F ethical guidelines.
    To know you need to test. More experiments = more data = more understanding. And ethics stops experimenting in the first place.

  26. Government:"You can't do such a risky thing!"
    * bombs Syrian children *
    "This has very complex ethical implications!"
    * Gives millions to Saudi Arabia *
    "You can't sacrifice a human life for scientific progress"
    * tortures prisoners *
    "It's very unethical! Okay? Oh and don't allow mice to live for over 55 days!"

  27. If the day come, maybe everyone can grow into full human beings like the vampires in Twilight City, perfect,stunning, attractive, high intelligence, the interstellar exploration will be just within reach. We never know in these people might appear next Einstein.

  28. i wrote my high school thesis on gene therapy… that was … wow … 19 years ago…

    that chinese researcher … where has he published? … thats both wow & horrific

  29. Well if you are part of the far left then you don't have to worry about editing a childs genome. You just abort it or leave it to die after it's born.

  30. we evolve everything around us to be better (seriously, everything, our pets, every single plant we eat, everything), might as well evolve ourselves to be better. i'd like to have kids but i have too many genetic disabilities i don't wanna pass on (willingly doing so is child abuse). it'd be great if we could go past editing genes one human at a time, and permanently alter our genes so we pass on these new better genes to our children without having to having to edit them too.

  31. I gotta ask… does it matter if we make designer babies? I've been against it on the grounds that it just seems too unnatural, but I started wondering why that was my line. Humans already do so much that's unnatural – how do we decide where to stop? Why is this unethical?

  32. crispr has not been shown to cause accidental mutations. there have been publications that indicate that, but the majority of the evidence (and the newer publications) do not suggest that this is true. of course the point still stands that we aren't completely sure yet, so human trials should still have to wait a few years.

  33. how come genom edit does not have a clear advantage over a transplant ?? it's just stupid with transplants there is always a immunosupresant therapy involved which screws with your body

  34. I was born with a disease that causes blindness around the early 20's, I stand among the most to gain from gene therapy and the concept of designer babies scares me more than almost anything else. I think the scariest part is the question of who decides what is and is not a disease worth treating.

  35. It really should only be used to help prevent severity of, or cure, diseases. That would be the most ethical to do. The HIV guy was stupid cus who's to even say those kids would ever even get. It, or risk getting it

  36. I have a friend whose SIL has lost two children to Tay Sachs. It would be nice to treat that. Or Huntington's (my mom's first patient as a nurse was a teenager dying from Huntington's).

  37. Personally I have been of the opinion that because of the lack of selective breeding in most societies oh, I feel like Humanity has stopped evolving and for us to develop a scientific way to edit our genes would in and of itself Evolution for our species

  38. There is a considerable number of questions surrounding this. Past history shows us that good, noble intentions and signed agreements only work with ethical people. There are people that will hack into computers so that they will be able to steal your money. There are also scientists that will use these techniques to obtain money, power or both. Much like computer security, there must be effective ways to forestall the inevitable rogue scientist.

  39. I don't think this should be limited to life-threatening conditions once we sufficiently understand it. Some diseases can be massively debilitating with no risk to an individual's life.

  40. Sure…go ahead…its not like we can handle flooding in NOLA…WHAT could possibly go wrong with this??😃

  41. I don't understand most of the ethical problems with fetal gene therapy. Not addressing the current logistical problems, why would anyone care if someone got to choose their kid's eye color or hair color or whatever?
    Also, we interfere with evolution all the time. Like corrective eye surgery, birth control, caring for our mentally and/or physically disabled, social safety nets, etc. I am not against any of these things (in fact, I'm glad we have/do them), but they definitely interfere with evolution. In other words, if one is worried about interfering with evolution, then one should have pretty much prevented civilization, and I think one is a little too late for that.

  42. Can Identify Intelligence and Physical Deformities in the Womb……Genetic Planned Parenthood when a Politician gets ahold of the Movement and they will PERVERT it like they do with EVERYTHING they say they are for. I am Disabled and would benefit Greatly from this – NO Thanks. I will not even take STEM CELLS. I will deal with the Hand I was given.

  43. so far we just give ourselves the occasional nudge towards the future, but we have always kept pushing and striving and that's something i love about people. we never give up on improving ourselves, even down to the very code that defines us. just wish we would stop throwing so much plastic in the oceans. and dumping toxic metals everywhere, and causing nasty radiation leaks into the ecosystem. but other than that we do pretty well for ourselves

  44. The two criteria listed are much more restrictive than simply limiting gene therapy to restore normal bodily functioning, which is unfortunate. Gene therapy is limited by these criteria to life-threatening conditions with no other options. Something like trisomy 21 wouldn't qualify, despite the tremendous effect this condition has on quality of life.

    I find that very unfortunate. Gene therapy has a large potential for abuse, but so do any number of other medical technologies. Ethics are independent of technology. An otherwise ethical action is not unethical simply because it is effected with gene therapy. It might be unethical because it hasn't been properly tested, but that is a very fact-specific circumstances that can be remedied.

  45. Personally I am fully for gene editing if its used to treat actual diseases. And with very serious diseases I even think it could be worth taking risks as the babies will be doomed either way if they get them. But I dont think it should be used just to design whatever traits you want. So pretty much agree with the politics we already have on it.

    Also for the gene editing interfering with evolution, we already are interfering with evolution when we take care of people who cant take care of themself (past early childhood) or give medical treatment to people who cant survive without it. If anything we need to compensate for lack of natural evolution that can allow some pretty bad genes to establish over time

  46. Well I think that many Sci-Fi books predicts pretty well how future civilization might look. Currently when this treatments/experiments are on early stage it seems far fetched, but it's very probable that in future rich people will 'order' perfect babies, while the general populous might have access to life threatening fixes – even if it will be illegal and very costly. Today someone incredibly rich doesn't wait for organ transplant like other 'mortals', even if on the paper he is like any other patient. It's only common sense, no need for tin foil hats 🙂

  47. Don't want to risk the safety of humans, but anyone else, that's okay apparently 🙁
    If experiments are too unsafe and unethical for humans, then they are too unsafe and unethical for non-humans. Other sentient beings value their lives and safety too!

  48. Love the views presented here, have seen too many negative 'designer baby' arguments since i was in high school (7 years ago). Even after studying a degree in biomedical science and and a master of pharmacy, still learnt a lot to tell people about gene editing from this.

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